It's a bit embarrassing to admit that I'm a fan of Meatloaf and the big man's dramatic operatic ballads. But there it is – I do love his music and my husband Jim and I often sing along (with too much volume and not enough tune) to the Bat Out of Hell I and II albums.

He sings a song called 'It just wont quit' and it goes: 'Is it a blessing? Or is it a curse? Does it get any better? Can it get any worse?' and it always makes me think of HD. The words always remind me that HD has been something of a blessing and a curse in my life. I've certainly cursed it from time to time – first of all many years ago on behalf of my dad and later, when I discovered that I had inherited the gene from him. I cursed my bad luck in the 50/50 toss of a coin which all of us with a parent affected by HD are very familiar with.

My over-riding memory of my dad's HD experience is his shame and guilt which seemed to arrive with the diagnosis and which sadly, I don't believe ever left him. This combined with his physical and cognitive decline and the eventual loss of his spark and personality brought a tangible sadness to our family. Seeing him struggle to communicate, eat and participate in normal family life was one of the most difficult experiences of my life and this is a sadness which has always stayed with me. I am sure that I also speak for my mum and my sister in saying this. To my knowledge, Dad never said the words 'Huntington's Disease' – never spoke about it or his feelings about it – never met anyone else touched by it – and never allowed anyone to share his pain. From what I understand of families dealing with HD in previous generations, this is not unusual.

I am sure that it is this experience which had led to my strong desire that the community be educated and informed so that they will have an understanding of HD and the impact it has on individuals and families. I am committed to doing all I can in this regard. I really do feel blessed to be a carrier of the gene in 2004 – we are so much more fortunate than those who went before us and I shudder to think of the misunderstanding, discrimination, cruelty and pain endured by so many people affected by HD in times past.

Strangely enough, HD really has brought some blessings to my life. I think of the people I have met along the way who have influenced and inspired me – people whom I'm sure I never would have met, had it not been for HD's presence in my life. I have found some wonderful friends in these people – friends whom I'm sure will be with me for the rest of my life. I also feel blessed each morning when my alarm goes off and I open my eyes, get out of bed and face another day, in good health. I really don't take any day for granted – each one is a bonus and I know that being gene positive has given me a sharper appreciation for each day I can enjoy.

In 1994, when I found out that I have the HD gene, I wondered whether I'd feel inclined to take up sky diving or motor racing (heaven forbid!) or want to race off around the world. It's true that I love to travel and I have been fortunate enough to do some travelling but I get the most enjoyment from the ordinariness of life. I love being home, working each day, walking around the Botanic Garden at lunch time, cooking, seeing my friends and spending time with Jim. In a strange twist of fate, I credit HD with giving me some clarity in my life and making me realise what is most important to me. I love my life and the people in it and I am very determined to make the most of who I am and what I have for as long as I can.

When I think about what the future may hold for me, I always come back to one particular thing which scares me more than anything else. It goes back to my experience of my dad's illness. When I think of the people in my life and what they bring to my life, I think of their personalities and the little traits that make them who they are. The funny, annoying, quirky idiosyncrasies that set them apart from others. To me, one of the saddest aspects of HD is that it can sometimes alter or diminish the personalities of sufferers and I think that really is a cruel aspect to the disease – maybe even a curse. I remind myself though, that the HD experience is not the same for everyone and I try not to focus on this. But if I am very honest – losing those little traits that make me me – this is the thing that scares me most about my future health. I really am very fortunate to be in good health at the age of 42 and I have a huge amount to be grateful for in my life.

So, a blessing or a curse? Maybe a little of both. I try to work hard at seeing more of the blessing and less of the curse.